Thursday, May 24, 2012

Compensation and Pension Exams... one of the reasons the system is broken (aka Our Hellish Day at the VA)

As I write this I'm sitting in our VA waiting on my husband who is in a *THREE* hour C&P (Compensation and Pension) exam with a doctor he's never met without a caregiver present.  This is my husband who many days can't leave the house because he simply can't deal with the chance of meeting unknown people. This is my husband that because of TBI often has a hard time maintaining focus for 5 minutes, much less three hours. This is my husband whom if you ask questions in a way that is too long or too convoluted, will give the wrong answer almost every time (not because he's lying, but because by that point he's not sure what to say and is just going to give you some answer). This is my husband that by the time they called him back for the exam was literally vibrating he was so anxious and had to go outside to get away (and then I had to figure out whether to go with him, or wait so that I could tell the doctor where he was when they called... may sound like a simple decision, but it's actually agonizing). This is also my husband who recently did the Gulf War Registry Exam (at our VA it's done by the C&P department even though it's not a compensation related exam) and despite the fact that I sent him back with detailed notes, a large portion of his registry info is now incorrect (and I now have to figure out how to get it redone) because he couldn't remember the info they asked for and the physician didn't read my notes (I guess he didn't believe me when I said he needed them).

We’ve had two weeks of complete hell getting to this day.  My husband seriously hates these exams (for all the reasons listed and because he always leaves feeling so agitated and edgy and it takes days to get settled down afterwards).  They’re sort of a form of torture in our household… granted I get why they’re necessary… but they cause an unbelievable amount of stress and fallout, both before and after. 

So, I just had to pause typing for a moment because the examiner came to get me so that I could go and get Shilo (my husband’s PTSD/TBI/mobility service dog) because she was getting in the way of the physical exam.  Now, let me explain that Shilo is extremely well trained and spends A LOT of time with us at the VA in various exams and appointments.  The only time she "gets in the way" is when she's working... when she's doing that part of her job that means she's "alerting" to a high level of stress and anxiety in my husband and is doing everything necessary to distract and "ground" him.  When I went in the room to get her (and asked if I sat in the room and never uttered a word, if I could sit there and help with Shilo so that my hubby didn't have to be without her, but was told "no"), my husband was so upset and so overwhelmed that he didn't even look up from his shoes to acknowledge that I was in the room.  He looked defeated. He looked lost. He looked like he was in pain... mentally and physically. Talk about a way to tear a wife's heart out... though I am not at all implying that was the intention of the doctor.

And here I sit... with a service dog who is trying to figure out why she was pulled away from her job at a time when she was needed... and trying to keep myself calm and convince myself not to cry. I so incredibly hate seeing him like that and worse still I hate seeing him like that when it's not necessary.

There is no national VA policy that says I am not allowed, as a full-time caregiver, to be in the exam room with my husband.  It's actually a decision made individually by each VA. There are some VA's that recognize and appreciate the significance of caregivers... the comfort we bring which results in a Veteran who is better able to focus and provide answers if possible... the insight we bring as the person most familiar and aware of the difficulties and challenges our Veteran's injuries cause on a daily basis... and even the cost-savings we offer since exams are then as accurate as possible, leaving it less likely for them to need to spend the time and cost redoing them (at a time when the VA claims process is incredibly backed up around the country and could use any and all means to increase efficiency).

I went yesterday (with my Caregiver Support Coordinator) to meet with the head Administrator over C&P's at our VA to find out what our actual policy is here. While I will say she was kind and helpful in brainstorming how to at least make sure that my husband doesn't have to go through his PTSD exam this way (we're going to use a new VA program that allows other physicians (physicians more familiar with and more familiar to our heroes) to complete exams for 70 conditions, including re-examinations of PTSD, but not initial PTSD exams), she also was unable to provide me with a copy of the written policy for our VA (she said she'd have to find it) and explained to me that if caregivers were allowed in exams (Note: Those caring for a veteran who has been legally declared incompetent through the courts can attend the exams, but they're the only exception.), it would give the examiner an unfair disadvantage to have a Veteran and caregiver present in the room so they would have to have more staff so the then it could be "even" (i.e., 2 people from the VA and 2 people on the "veterans" side). 

While I understand and appreciate that these exams are normally about money (while in our case this time it's because we've filed for Total and Permanent Status early for my husband, which won't actually change anything about the amount my husband is receiving each month, but still triggered a new round of all his previous exams) and there is a concern that some people are trying to "play" the system and get more compensation than they're entitled to, I disagree greatly with that stance. My argument is that having a caregiver present doesn't make any more risk of that then if the Veteran-only is present.  There is always a risk that someone is going to lie or embellish, though for the most part I find people UNDER-endorse their symptoms, especially those that are related to mental and neurological conditions, because they simply don't know how to put into words everything that they're experiencing.  However, by having caregivers present, there is a strong probability of coming away with a more accurate exam... one that is most fair to the Veteran and most completely reflects what the Veteran is facing as a result of his or her service to our country.  AND the C&P process would also be much less stressful and anxiety filled for those heroes.

Instead, it seems in some places, at some VA’s, we (those who spend our days and nights loving and caring for injured warriors) are viewed as adversaries… someone who is trying to “trick” the system, someone who is trying to give their hero an unfair advantage, someone who (despite the thousands of hours we’ve spent by the side of our heroes) has an opinion and insight that is not valuable enough to include in trying to get a full picture of a Veteran’s injuries.

So, here I sit.  Hoping that the hours I spent filling out the form the VA sent for these exams and adding additional notes for the doctor... combined with the 60 seconds I had to try to explain to her to please keep her questions brief, clear, and concise to minimize my husband's confusion and anxiety... is enough.

Fast forward... we are now 2 hours and 15 minutes in to the exam, and she (the doctor) comes out and calls my name so that I can take Shilo to my husband. She then says that her portion of the exam is over and that now he needs to go to X-ray, but that I am welcome to go with him to wait (thank GOD!). Shilo goes into full work mode, trying to get him calmed down and focused, while we wait. We are finally done with this exam 2 hours and 45 minutes after it started. My dear hero keeps commenting about the “blankety, blank, blank” scales (pain scales) that the doctor kept trying to get him to use to rate his pain levels.  He says he just didn’t understand and kept trying to explain that he didn’t know what to say.  He says the doctor finally found another sheet to try to make it easier for him to figure out but he’s still not sure if he did it right.  And (of course) that he kept having to ask her to repeat things and a few times he finally just told her “something”.  Lovely.  So hope it’s actually accurate.  Of course, now I’m worried that the exam report will be wrong… not because the doctor recorded anything wrong, but because the hubby provided incorrect responses because he was overwhelmed and needed to just get done.  It wouldn’t be the first time that’s happened.  (And it’s REALLLLLY hard to “fix” once the wrong answers are in black and white.)  Bleh.  Just bleh.

My husband looks like crap, I look like crap, and we have 2 hours to kill before the next one starts (an audiology C&P... at least that one is pretty straightforward... "Do you have ringing in your ears... Press this button if you hear a beep.")

With two hours to fill (and my hubby threatening to mutiny) I pull out a tried and true caregiver card.. "tell me anywhere I can take you to get something to eat and we will go." Of course, in our world that means fast food, drive thru, eat-in-the-car is the only option (got to love that PTSD), but at least it's a distraction. Of course he names somewhere that I don't know where it is and he "thinks" he knows (some of the most dangerous words in TBI world are "I think I know..." because then it means on the caregiver side you have two options. First, follow the "I think" directions with the very real probability of being on a wild goose chase.  Or, not following those directions and seeming like you think your Veteran doesn't know what they're saying. Bleh.) So for a while, I follow the directions and we're getting more and more lost (a lovely PTSD trigger) and my headache is turning into full on Caregiver "crazy mode"... head pounding, stomach churning, trying to use my best nurse-calming-soothe-the-beast voice.  Fortunately, I have fellow caregivers on speed dial... wonderful people who live here in PTSD/TBI world with me and whom I can call and make strange requests to (i.e., I need to find a Krystal's ASAP!!!)... friends who don't ask questions, can hear that "nurse" voice, and just help (a LIFESAVER in our world).

And now we're back at the VA waiting.  Lunch has been found and we are holed up our favorite quiet corner of this facility... trying to calmly wait out the time and let the storm of the events of the morning caused recede.

We finally head to the waiting area for the Audiology C&P.  When we get there they hand us another form to fill out with the dreaded SCALES at the top that my husband is already pissed about.  We’re sitting in a tiny waiting area with 3 or 4 other Veterans and caregivers.  As soon as I start going down the form to help fill it out, and I get to one of the scales (i.e., How loud is the ringing in your ears?”), he goes off.  “No more f---ing scales, I’m not doing any more scales, I don’t know how to answer that all I know is it’s f---ing loud in my head… it’s f---ing loud.” “OOOOOkay,” I think, as everyone in the waiting area stares and the receptionist behind the desk leans out to see what the commotion is, “we’re going to say ‘f---ing loud’ is an eight.”

Before I have a chance to complete the form, the audiology doctor comes to call the husband back.  I hurry over, try to explain that if he’s going to need dates for the information on the back he’ll need to ask me, and try to calmly smile at the man I’m married to… the one who has already had a much too long, much too stressful day.

While I’m waiting, there’s an older couple (in their eighties I would guess) sitting in the waiting room, too. She’s doing the same thing I was just doing… going down the same form and paraphrasing the questions so they’re simpler and more straightforward for her husband.  When she gets to some questions about “how well can you hear at parties,” and “does your hearing loss impact your ability to visit friends,” both times he says something to the effect of “How would I know, I don’t go to parties, why would I go to a party?”, “I never visit friends. What are they talking about?”.  I think to myself that I wonder if he’s a World War II or Korean War Veteran… and I wonder from those responses, a few others, and the “everything is alright” tone his wife is using (one I recognize well… after all I was just using it), if he, too, has PTSD.  There’s even a question about if his hearing loss contributes to or makes him feel more agitated… at that question his wife sort of does a semi-sarcastic giggle and says, “Well, I can answer that one.” (Wow, she sounds like me.)  I wonder if I’m looking at a picture of my husband and I in 50 something years… some of this sounds sooooo familiar.  And, I had also noticed that they were the one couple in the waiting room that didn’t really glare or give any “looks” after the hubby’s tirade.  “Yep,” I think, “maybe she’s a fellow PTSD wife.” (and I snap a quick picture… only of their feet for privacy purposes… to remember my potential “sister” PTSD wife.)

Just as I’m doing the debate about whether or not to strike up a conversation (and whether or not it would just add to her husband’s obvious irritation), my own Veteran is back.  Thank goodness at least this C&P was only 20 minutes. When I ask how the exam went, he says, “The pauses between the beeps were too long, so I kept pressing the button.”  To which I respond, “Honey, you were only supposed to press the button if you heard a beep… if you didn’t hear the beep, it’s because your hearing isn’t good enough to hear that sound.” Then, he replies again, “But the pauses were too long, I had to push the button.”  We go through the cycle one more time… and then I give up.  Pointless to argue, apparently somewhere in TBI land this stance makes sense to him, and I’m not going to do anything other than upset him by continuing to push it.  Lovely.  We’ll just have to wait and see if the testing now shows he has miraculously perfect hearing now (despite needing hearing aids on a daily basis) because he was concerned about filling the pauses.  Ugh.  Did I mention it’s a REALLY GOOD IDEA for a caregiver to be in the exam room????

I can’t help but remember we’ve still got the TBI exam to go in a few weeks… the exam I find it MOST ridiculous that caregivers can’t attend.  “Hello, hero with brain injury that causes memory loss, confusion, agitation, and general monumental processing difficulties… we don’t think you need someone here to help you… we’re just going to sit and ask you a bunch of questions that you don’t know how to answer, can’t remember how to answer, and in general just are too totally overwhelmed to answer. BUT, we’re not going to allow the person who lives with you every day and could help us get the right answers in the room to help.  Nope.  That doesn’t make sense.  Why would we do that?” Bleh.

As I’ve had the opportunity to meet with, speak in front of, and work with people at different levels of leadership around the country within the VA and in agencies that impact the VA, I’ve continually brought up this issue.  So far, I haven’t been able to find anyone to listen.  However, I am a “typical” stubborn Veteran’s wife and won’t be giving up any time soon.  It’s a portion of the C&P process that is broken, that wastes time, that weights the system (albeit I believe unintentionally) against Veteran’s with mental and neurological issues, and it does not mesh with the VA’s advancements toward more patient-centric and family-inclusive care (the type of care that is best for those who have laid down their bodies and minds for our country).

So, there’s our story… a day in the throws of the VA Compensation and Pension process.  What’s your experience?


((HUGS)) to all,
Brannan

Brannan Vines
Proud wife of an OIF Veteran
Founder of FamilyOfaVet.com - an organization dedicated to helping heroes and their loved ones survive and thrive after combat with real world info about PTSD, TBI, and Life After Combat!

*NOTE: for more information about having a physician familiar with your Veteran complete a C&P exam (instead of going through the traditional C&P examiners), including a list of the 70 conditions this applies to, visit: http://benefits.va.gov/disabilityexams/*

9 comments:

  1. When we went to the C&P for TBI it was a Nurse Partitioner, that blew me away. How can some Nurse Partitioner make a proper diagnoses on a TBI? Why would they not have a Neuro Psych or Neurologist do the work? But I got to say, at least I was allowed in there this time. His dog stayed outside with the child. The room was so tiny, it made me kinda freaked out.

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  2. Oh my gosh, Brannan, you just described a day in the life of my husband (although he doesn't have a service dog). Oh the wonderful world of TBI.

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  3. Well, we went through this process this last week, and it was just as much of a nightmare, and the notes that were written about my husband completely shattered his soul, and now, I get to pick up the pieces. Awesome. Just a random C&P re-eval, for really no reason that anyone could explain. Apparently I pissed of the wrong person.

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  4. I am glad that C&P exams are over for us as of right now. I feel everyone's pain and I have been there and done that. The VA we go to knows me on a first name basis.lol. One thing I did that made a difference, is I INSISTED on going back with hubby. Nothing stopped me even in C&P. IF the doctor refused, he didn't see hubby. I stood firm and had numerous bouts but after threatening to keep going higher up the ladder, even to Washington, they broke down and gave in. If you have POA they can't stop you..... Hubby would get so agitated and confused and then the doctors would put words in his mouth. Finally we are done with the exams. Ladies, Hang in there. Be strong and always stand your ground. You are with the Veteran all the time and you know him better. Hubby gets mad at me, because I tell things that he wouldn't, but it is for his safety and well being. It needs to be documented. I wish you all well

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  5. Brannan ((((HUGS)))) to you and all of us that deal with TBI/PTSD on a daily basis. We are currently going through the MEB and it is sad how much we have to advocate for and defend the very real injuries that our heroes have. Thanks for sharing.

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  6. This is totally unforgivable. And people believe that government health (sickness) care will be a good thing? My heart goes out to all our servicemen and women who suffered TBI/PTSD and their caregivers. It's time that Congress address the inadequacies of the VA system and FIX it. Our heroes deserve no less. God bless you all.

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  7. Anonymous, having done medical billing to Medicaid and experiencing the brilliance of both TPR and Chumpva, I can relate to your thoughts on government health care.

    A good place to start in fixing the VA would be fire most of the staff. They are incompetent, drunk/buzzed on duty, and apathetic -- and that's just for starters. My husband, brother, and both my parents have all been screwed over by the VA. It is a ridiculous system that can only be fixed by starting over completely.

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  8. Hi, I'm a vet and just got evaluated by a VA hospital audiology. They said that I had tinnitus in both ears and some nerve damage with hearing loss. I reported this beginning around 9-10 years ago, when I was in the service and fired weapons (and worked with loud equipment) regularly. Can anyone tell me if I have a shot of getting a service connection, and if so, how to go about it? I'm going to obtain a copy of the records and contact my local DAV. Also, the Dr. informed me I was eligible for free hearing aids and further evals, if it ever got to that point (even though it's not service connected right now).

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  9. Thank you all . A Vet..

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